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Just got back from our yearly well visit...

Posted by on Apr. 20, 2018 at 6:24 PM
  • 6 Replies

Sam is 9.5yrs old and now 4'8" (85%) and 61lbs (35%). He hasnt gained weight in over a year. We need to increase his fats and protein. And because his anxiety seems to be hitting an all time high, in the meantime of seeing someone and getting meds and stuff organized for him, she suggested we also start supplementing with Omega 3's and other things that can help him. So, my question is, what exactly are you giving your child in terms of gut and brain developement for help with ASD and the likes??

Oh and she is requesting many many blood tests and another TTG (he is celiac) test, even though he is not eating any to see if there is still something there and it might be the cause of his weight loss/no gain issue. There is major inflammation in there and we need to figure out why. And also asked for the ASD profile which includes a ton of other things like iron, etc. 

~~Sarah~~

Samuel (11/24/2008) - ADD, SPD, Anxiety, ASD
Elijah (10/28/2012) - ADHD, Anxiety, Seizures, 15Q
Micah (12/16/2015) - FPIES, 22Q, 15Q, MCAS, CHD, ASD, Seizures

by on Apr. 20, 2018 at 6:24 PM
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Replies (1-6):
emarin77
by Gold Member on Apr. 20, 2018 at 6:37 PM

A nutritionist can help him.

Stephw1110
by Silver Member on Apr. 20, 2018 at 6:37 PM
To be honest, we do it all. We have been gluten free dairy free for years now (we are able to cheat occasionally at this point with very little repercussions). My son has never tested positive on a celiacs test but is much better overall without gluten in his diet. We did Omega 3s for quite a while but my son is also a picky eater and now has what we suspect is histamine intolerance that is a huge pain. So basically he reacts to any high histamine food. (Lots of good Omega foods) We are considering going on a more in-depth diet like GAPS or SCD but are waiting till we see a new PANS specialist. We do no processed food, no dyes, no additives, no sugar (may be the best thing we’ve done in years). Ben hasn’t ever tested “allergic” to dairy or gluten, or anything for that matter, but I cringe when I think where our life would be had we not tried them. We do probiotics, we do supplementation, we do things to make sure he is detoxing (Epsom salt baths, ionic foot baths). We have done SNP testing (MTHFR). We see a homeopath. We’ve done a lot. Some things are successful, some things are neutral, and some things I would choose not to do if we could do it over again. Everything we’ve done is under the care of a licenses physican who has cared for her own child with ASD. Like I said, I don’t know if Ben would be where he is today had we not given it a chance.
myfavoriteshoes
by Member on Apr. 20, 2018 at 7:14 PM


Quoting Stephw1110: To be honest, we do it all. We have been gluten free dairy free for years now (we are able to cheat occasionally at this point with very little repercussions). My son has never tested positive on a celiacs test but is much better overall without gluten in his diet. We did Omega 3s for quite a while but my son is also a picky eater and now has what we suspect is histamine intolerance that is a huge pain. So basically he reacts to any high histamine food. (Lots of good Omega foods) We are considering going on a more in-depth diet like GAPS or SCD but are waiting till we see a new PANS specialist. We do no processed food, no dyes, no additives, no sugar (may be the best thing we’ve done in years). Ben hasn’t ever tested “allergic” to dairy or gluten, or anything for that matter, but I cringe when I think where our life would be had we not tried them. We do probiotics, we do supplementation, we do things to make sure he is detoxing (Epsom salt baths, ionic foot baths). We have done SNP testing (MTHFR). We see a homeopath. We’ve done a lot. Some things are successful, some things are neutral, and some things I would choose not to do if we could do it over again. Everything we’ve done is under the care of a licenses physican who has cared for her own child with ASD. Like I said, I don’t know if Ben would be where he is today had we not given it a chance.

We are GF/DF, soy free, corn free, mosty egg free (he can eat them, i cant, hubby/5yr old can eat yolks only)... on very strict no dyes, no additives, no junk diet (FAILSAFE diet). We have MCAS here (no high histamine foods either). We have tried GAPS with hubby but it was just impossible financially for a family of 5. So now I am turning to the natural things to help him. Those are good ideas though. Thank you. I need to start his detox baths again. It helped back in the day (2014-2015). 

SamMom912
by Platinum Member on Apr. 21, 2018 at 7:19 AM
Sam takes a lot.

Coq10, True Calm, Vit B12, D3, Calcium, probiotics, fish oil, l methyl b6, b12, multivitamin, alpha lipoc acid, florastor.

myfavoriteshoes
by Member on Apr. 21, 2018 at 8:48 AM


Quoting SamMom912: Sam takes a lot. Coq10, True Calm, Vit B12, D3, Calcium, probiotics, fish oil, l methyl b6, b12, multivitamin, alpha lipoc acid, florastor.

So basically a Mito Cocktail plus other things... ok. Gotcha. Thanks. I have to go that route anyway maybe with the youngest for Mito issues, so looking into it for the others too i guess.

~~Sarah~~

Samuel (11/24/2008) - ADD, SPD, Anxiety, ASD
Elijah (10/28/2012) - ADHD, Anxiety, Seizures, 15Q, MCAS
Micah (12/16/2015) - FPIES, 22Q/Digeorge, 15Q, MCAS, CHD, ASD, Seizures

Momof4AEMW
by Platinum Member on Apr. 22, 2018 at 8:04 PM
My son takes nothing. My daughter only thyroid and constipation meds.
My daughter has gained 2 pounds in two years and is a 39 lb 9.5 year old, 42 inch short pot. Yet she is healthy. I'd have your son's thyroid run.
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